Michele Verdonck

Experiences of using an Environmental Control System (ECS) for persons with high cervical spinal cord injury: the interplay between hassle and engagement

Abstract Purpose: Environmental Control Systems (ECS) have many benefits; however studies of personal experience of ECS use are scarce. This qualitative study explored the insiders’ experience of using an ECS. Method: An ECS starter-pack was compiled and trialled for an eight-week period with six persons with high spinal cord injuries (SCI) living in Ireland. Semi-structured interviews were subsequently completed with each person and analysed using Interpretative Phenomenological Analysis (IPA). Findings: Two major themes emerged: “Taking back a little of what has been lost”, and “Getting used to ECS” which is the focus of the current paper. This theme captured a dynamic interplay between the experience of “hassle” and “engagement” for new users of ECS. “Hassle” resulted from technological frustrations and the challenge of breaking familiar habits, while “Engagement” resulted from feeling good, having fun and being surprised. Conclusions: The complex interweaving of hassle and engagement experienced by new ECS users reflects the clinical experience of rehabilitation providers. The importance of overcoming initial hassle needs to be understood by clinicians and users in order to maximise the potential benefit of ECS. Non-use must be considered one reasonable outcome if based on realistic ECS trials. Implications for Rehabilitation People with high cervical SCI find ECS use to be engaging, enjoyable, and fun. Successful engagement with ECS involves overcoming “hassle”. For some, ECS may be too much hassle resulting in non-use. However, it is important that non-use is not necessarily considered a failure, provided it is based on real experience and well-informed choice. Realistic trials need to be made available early in rehabilitation in order to facilitate the establishment of ECS use as a habit.

The meaning ascribed to wheeled mobility devices by individuals who use wheelchairs and scooters: a metasynthesis

Abstract Purpose: To synthesize qualitative study findings on the meaning ascribed to wheelchairs and wheeled mobility devices (WMD) by WMD users. Method: Bibliographic databases were systematically searched up to January 2015 to identify relevant papers. Reviewers selected studies, assessed methodological quality and thematically synthesized findings using a metasynthesis process described by Thomas and Harden (2008). Results: Twenty articles were included. Four descriptive themes emerged: physical environment interaction; sociocultural experiences; participation in activities and occupations; and WMD–self relationship. WMD use was found to be a complex experience that can fluctuate through interaction with aspects of the environment and opportunities for participation. The analytic theme, dynamic duality of WMD experience, addressed the simultaneous enabling and disabling aspects of WMD use. Conclusions: Metasyntheses enable researchers to gain a deeper understanding of issues by examining findings across studies. Findings of this study provide a framework for understanding the complexity of WMD use. The framework has practical applications for clinicians and users of WMD in understanding the experience of WMD to be neither singular nor static. Implications for Rehabilitation The meaning of wheeled mobility device (WMD) use is dynamically influenced by the environment and opportunities afforded for occupational and social participation. A duality of experiences can emerge for WMD users, where wheeled mobility use can be at the same time positive and negative, based on the interaction with the environment. Clinicians need to determine the meaning that each individual user ascribes to the WMD, and to consider how that meaning may change over time. By understanding the meaning ascribed to WMD use by individuals, clinicians can be better prepared to work with the WMD users to address negative reinforcers of the experience in physical and sociocultural environments as well as highlighting the positive experiences.

The impact of the environment on elite wheelchair basketball athletes: a cross-case comparison

Abstract The physical and social environment impacts on athletic performance. However, previous research has focused mainly on able-bodied sport, with fewer studies being conducted on para-sport programmes. The purpose of this study was to describe the impact of the social and physical environment on wheelchair basketball athletes. A multiple case study method was used to compare two different settings: Australian wheelchair basketball and a collegiate wheelchair basketball programme in the USA. Data analyses were undertaken in line with case study method and both cases were analysed separately followed by a cross-case comparison to determine similarities. The environmental facilitators consistent across both cases provide recommendations for the development of high performance para-sport. These recommendations include providing accessible training facilities, financial support for specialised equipment, and access to high quality coaching.

Taking back a little of what you have lost: the meaning of using an Environmental Control System (ECS) for people with high cervical spinal cord injury

Abstract Purpose: Assistive technologies have deep and personal meanings for people with disabilities. This study sought to provide an in-depth exploration of the subjective meaning of Environmental Control System (ECS) use for people with high cervical spinal cord injury. Materials and method: Interpretative Phenomenological Analysis (IPA) was used to explore the personal meaning of ECS. In-depth interviews with five participants were analyzed according to recommended IPA guidelines to produce a rich phenomenological account of lived experience. Results: This study identified two overarching themes, one of which was the subject of an earlier publication. This paper focuses on the second theme “taking back a little of what you have lost” and its two main components “reclaiming a little doing” and “feeling enabled”. Doing everyday things, being less dependent on others and feeling safer and less needy all contributed to participants experience of regaining something important of what had been lost. Conclusions: A nuanced range of meanings, demonstrating how “a little can mean a lot” emerged from this study. For those with high cervical spinal cord injury, “reclaiming a little doing” resulted in subtle, but subjectively significant, improvements in identity, relationships and well-being, while “feeling enabled” was both enjoyable and empowering and led to an increased sense of safety and reduced neediness. The potentially powerful impact on individuals with life-altering injuries of reclaiming a little of what they had lost, supports the value of more widespread access to and provision of ECS. Implications for rehabilitation While ECS use produces only a “little” objective change in activity levels, it subjectively means “a lot” to people with high level injuries. ECS enable people to “do” everyday things as well help in supporting them to “feel” less dependent and needy. Using ECS facilitates much more than functional tasks and a sense of security. It helps promote positive self-perception and continuity of being. It is important for those with high cervical spinal cord injuries to have access to ECS to ensure they can enjoy both psychological and physical benefits.

Smart-device environmental control systems: experiences of people with cervical spinal cord injuries

Abstract Background: Environmental control systems (ECS) are devices that enable people with severe physical limitations to independently control household appliances. Recent advancements in the area of environmental control technology have led to the development of ECS that can be controlled through mainstream smart-devices. There is limited research on ECS within Australia and no known research addressing smart-device ECS. The current study sought to explore users’ experiences with smart-device ECS within Australia. Methods: The study followed a single embedded case study method. Participants (n = 5) were existing ECS users with a cervical spinal cord injury. Data were collected through semi-structured interviews with participants, reflexive journals and field notes. An inductive approach was used to analyze the data thematically. Results and Conclusions: The experience of using a smart-device ECS presented both opportunities and costs to users. The opportunities included: independent control, choice, peace of mind, connection, effective resource use, and control over smart-phone functions and applications. The associated costs included: financial, time, frustration, and technical limitations. While findings are similar to previous research into traditional ECS this study indicates that smart-device ECS also offered a new opportunity for users to access mainstream smart-device functions and applications. Future research should investigate methods and resources that practitioners could utilize to better support new users of smart-device ECS. Implications for Rehabilitation As with traditional environmental control systems, users of smart environmental control systems report increased independence, choice and control. Smart-device environmental control systems provide users with access to mainstream smart-device functions and applications, which facilitate connection to family and the outside world. The costs to the user of smart-device environmental control systems include monetary and time investment, dealing with technical limitations and resulting frustration. Prescribers and installers must consider ways to mitigate these costs experienced by users.

A qualitative metasynthesis of the meaning of speech-generating devices for people with complex communication needs

Abstract The aim of this metasynthesis review of published qualitative research was to investigate the lived experience and meaning ascribed to speech-generating devices (SGDs) by people with complex communication needs and their familiar communication partners. Bibliographic databases were searched up to June 2016, and selected articles were assessed for their relevance to the research aim. The metasynthesis included 21 original articles and resulted in the identification of six main themes, each of which was comprised of two or more sub-themes that related to the experience of using SGD: It’s an Inefficient Voice, It’s Not a Natural Voice, Making the Most of This Voice, It’s My Voice, It’s More Than a Voice, and Having a Voice: Being Heard. The findings depict how use of an SGD is a complex process of understanding the limitations of the device, acknowledging expectations of society, using strategies to optimize communication, being aware of what an SGD represents, and using the SGD to enable social participation and a sense of empowerment.

Tablet devices: Supporting practitioners to conduct informed conversations:

Statement of context The ubiquitous nature of tablet devices and their related applications known as apps has led to their use as assistive technologies in a range of settings, including intellectual disability. Using tablet technology for this purpose requires collaboration to foster informed choices for users. Critical reflection on practice Two initiatives are described, aimed at building knowledge and confidence of practitioners to enable informed conversations with people who plan to use tablet devices. Outcomes of these training workshops and a fact sheet are presented. Implications for practice Findings from 99 attendees indicated that training and resources were beneficial to practitioners to increase knowledge and confidence. However, ongoing support is required to ensure confidence and collaboration.

Enhancing occupational performance in the virtual context using smart technology

Statement of context Physical limitations restrict occupational performance in the virtual context for people with cervical spinal cord injuries. Critical reflection on practice A review of smart device goals in 10 health care records at one hospital identified three types of occupational therapy intervention. Compensation involved alternative methods of physical access, positioning, and customisation of devices. Acquisition involved providing opportunities for learning and overcoming challenges. Education and training sought to empower users and their families to use smart devices successfully. Implications for practice Occupational therapists need to incorporate virtual occupations and the use of personal smart devices within current practice. This requires keeping abreast of mainstream technology advances as well as providing clients with opportunities and support within the virtual context.